Jeremy Manuel "After 21 years"

Jeremy Manuel "After 21 years"

I write to let you know that at the most recent Annual General Meeting of the UK Gauchers Association I stood down as its’ Chairman after more than twenty years’ service. My successor, who many of you will know, is Dan Brown. Dan has been a director and board member for approximately seven years.

Dan, a lawyer by training, has a strong understanding of the issues that face the Gaucher community and a passion for serving Gaucher patients. Dan will be working with a strong team of Directors: Sue Noe, Alan Rosen and Emily Lew who together with Tanya and Sarah will, I am sure, lead the Association to greater heights.

At the same meeting Don Tendell, our treasurer for over seventeen years, also retired. I want to thank him for the countless hours he has spent not only looking after our finances but also for so expertly looking after our regulatory and compliance obligations. Don’s role as treasurer has been filled by Andrew Bloom.

Please forgive the impersonal nature of this letter but I wanted to announce these changes as quickly as possible. We will fix up meetings in the next few months for Dan to tell you of his future plans for the Association.

I want to take this opportunity to express my thanks to everybody who has played their part in helping to grow the Association into the organisation that it has become. As Chairman I have benefitted from the glory of our successes but it has been the powerful collaboration of so many people, driven by a real passion of wanting to “do something” that has made us the force that we are. At the founding of the Association we had no concept of what this fledgling support group would become. Our initial aspirations were limited but we soon found ourselves engaging with specialist clinicians and academics who made sure that we were always given the opportunity of having our voices heard. The Association owes the doctors at what have become the “centres” eternal gratitude for their advice, guidance and for constantly championing our cause.

The Association has enjoyed a close working relationship with the companies engaged in the field. We haven’t always seen “eye to eye” but I want to thank them all for the courteous and respectful way they have engaged with me personally. Thanks too to the countless individuals with whom I have engaged in the health services and those working with the other organisations in the field of Lysosomal Storage Disorders.

I am sure that you will understand why I have not thanked individuals by name in the last paragraphs but I do want to make a special mention and honour the memory of Susan Lewis who so creatively and passionately laid the foundations and then built the structure of the Association in our first fifteen years. I also pay tribute to our marvellous and inspirational Chief Executive Tanya Collin Histed who has been a constant support to me personally and
who will I know continue to deliver with great skill and flair the ever increasing contribution of the Gaucher Association.

I am not leaving the field completely. I have agreed at Dan’s request to remain on the board of the Association and I will continue in my role as the Chairman of the European Gaucher Alliance.

It has been my privilege to Chair of the Association over the last twenty years. It is not false modesty when I say that I honestly feel that I have gained more than I have given, and for that I thank you all.